Ruth Snyder, R.N. +
James Williams
Biomedical Issues From An Autistic
Perspective: How Do We
Experience Them?
Introductions
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Name: James Williams
Individual with autism
History of biomedical health issues
Have not always been open about these
issues
Introductions
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Name: Ruth Snyder, RN
Individual with autism, older than James
Parent of 4 children, 2 with autism
Kids diagnosed when searching for
answers
Health issues often dismissed as mental
problems, personality issues, or by choice
Have not always been able to talk, literally,
regardless of desire or choice
What will be included in this
presentation…
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Personal experiences with biomedical
issues
How we dealt with those issues and how
they impacted our lives
How working together, ourselves, and
meeting others with biomedical issues
finally compelled us to open up about
them
This presentation is
NOT an anti-vaccine
or pro-vaccine
presentation!
Let’s Not Forget…
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The vaccine controversy has been a major
obstacle for accurate research on biomedical
issues and autism
People with autism still endure biomedical
issues, regardless of their cause, and should
still be researched and medically treated
Not all biomedical research/ treatment is antivaccine, yet people often stereotype it as being
so
New Research Suggests People With Autism Have
Physical Differences Just As They Have Brain
Differences!
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Dr. Jeff Bradstreet and Martha Herbert have found
evidence of distinct medical ailments that have only
been found in the bodies of children with autism
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Dena Gassner has uncovered evidence showing that
hormone levels differ in the bodies of individuals with
autism, discussing the possibility of “hormone
poisoning”
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And many people with autism often have greater
behavioral issues when they don’t feel well physically!
Let’s Ask the Audience…
Raise your hand if you are a parent who has a
child who has endured any biomedical issue, such
as impaired digestion, food allergies, or an
impaired immune system.
Raise your hand if you are a person with autism
who has endured biomedical issues.
Have you or any of your children benefited from a
special diet, or any biomedical interventions such
as probiotics or vitamin supplements?
Case Study: Autism Oasis for Kids
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In 2011, James made several visits to the Autism Oasis
for Kids, a special school for children with autism in
Florida.
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The school’s director prepared hot lunches daily that
were gluten-free, casein-free, and vegetarian, and every
student enrolled in her school was given the option to
receive these adapted hot lunches.
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The director noted to me that the students with autism
who ate her hot lunches daily often showed improvement
academically and behaviorally.
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Ruth has made a similar discovery in public schools.
The physiological symptoms and
biomedical issues with autism should
not be ignored or dismissed as
fantasies!
We should be researching them and
figuring out what these symptoms
mean!
One could even argue, based on this evidence, that
autism constitutes a physiological disorder as it
does a mental disorder, and that biomedical issues
and physiological symptoms are just as much a part
of autism as are social and sensory issues.
For this reason, we decided to start presenting
together about biomedical issues with autism, as
individuals who have and still are enduring many of
these issues ourselves.
Origins of this Presentation
• We have attended the AutismOne conference, a
biomedical conference, for many years, where we met
each other, though initially we were not willing or able to
discuss biomedical issues together
• We both felt concern over the lack of speakers with
autism discussing their biomedical issues and attempts to
stereotype these issues as being the ramblings of
incompetent doctors or nutty anti-vaccine activists...or the
*conspiracy theorists*
• We both benefit from many biomedical interventions, even
those that have been dismissed as tomfoolery by others
• We decided we wanted to change things and share our
stories
With that, we
shall now discuss
our history!
James’ Biomedical Memories
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Endured a major sinus infection, known as “sinusitis,”
from age 3 to 5
Endured frequent headaches from age 5 to age 7
Suffered from two eyes that could not teem or work
together and underwent intensive eye therapy around
similar time
Endured routine feelings of soreness in my feet and
could not walk longer than two blocks without pain and
exhaustion
Was unable to keep my head straight while walking
Had multiple cuts to my chin as a young child
Endured several freak nosebleeds in the middle of the
night at age 7
James’ Biomedical Memories
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Many doctors were unable to diagnose the causes of
those ailments at first
Finally, some of them were diagnosed and treated
The sinusitis was caused by enlarged adenoids in my
nose and I received a major adenoidectomy when I was
five
The headaches were caused by an unknown allergy to
gluten—after cutting out gluten at the age of 7 my
headaches finally disappeared, and I have been gluten
free for the rest of my life
To this day I endure major physical ailments if I eat
gluten, which can range from chills, headaches, hot
flashes, a sore throat and runny nose, physical
soreness, and diarrhea
James’ Biomedical Memories
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Freak nosebleeds were never diagnosed
Foot soreness was due to a combination of low
muscle tone and improperly jointed feet, underwent
extensive occupational and physical therapy as a child
and wore orthotics in my shoes for over 10 years,
today I routinely walk up to 3-4 miles as a time
Improper walking posture was due to curves in my
spine and developing scoliosis and I underwent
extensive chiropractic treatments for over 6 years
Chin cuts due to issues with balance that often
caused me to have falls while running or walking
James’ Biomedical Memories
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Important to remember: All of these issues happened
concurrently with many mental issues of autism!
Often struggled with communicating these issues to
others sometimes due to verbal ability and other times
due to not being able to know where and when to talk
out of fear of being misunderstood or disciplined
Often wondered if these experiences were unique to me
or if this was the reality of childhood, since I was not
aware of my autism until age 8
Spent many hours trying to focus on how to endure the
pain I was going through
However, I did NOT spend much time thinking whether
or not these issues were caused by vaccinations!
James’ Biomedical Memories
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During this time, I endured many cycles of
being unable to regulate meals and
digestion…
At one part of my life, I routinely stuffed
myself at meals, unable to entirely know
when I was full
I often felt intense hunger even after a large
meal (sometimes only 5 minutes after
previously feeling full) and a constant need to
eat
TO BE
CONTINUED…
Ruth's Biomedical Memories
Younger than 3 months:
“Sick, mom scared enough to almost take
you to the doctor"
Many signs of malnourishment
Ruth's Biomedical Memories
By 2nd Grade:
I was too tired and weak to function, dismissed and sent to
school until first "pox" appeared. Even after I was “cleared”
to return, I never fully recovered.
Months later, my school RN, after several days, called
parents, “You have to take her to the doctor, her fever is
103!” Suffered with pneumonia.
In addition, I suffered from Hallucinations, vertigo, as well as
difficulty processing information. This was normal for me as
was poor health.
Ruth's Biomedical Memories
My parents’ lack of knowledge and support allowed me to
stay home when ill. My sister stayed home so they did not
have to miss work.
In time too much missed school brought in the authorities.
Their solution was to put me in the hospital.
As an adult, researching my medical history, I realized it was
what we call a mental institution and my health issues were
never looked into. Autism was discovered and mentioned,
but my parents couldn’t process it.
Ruth's Biomedical Memories
While staying at the hospital, my medication had to be
stopped due to dangerously low blood pressure.
Without intent, I was taught to believe everything physical is
mental!
If I did not feel well after that, my mother called psychiatrist,
not physician, MD, etc.
I learned to go to a counselor, if I did not feel well... mind...
too much to explain.
Ruth's Biomedical Memories
My saving grace:
My pregnancy and my curiosity, which
lead me to pursue a career in health
care as an RN.
And *where* was
Autism while all of
this was going on…
RUTH: When my immune system collapsed in
the 2nd grade my physical health affected all my
abilities. Later, when I was institutionalized my
physical aspects were neglected. Autism was
diagnosed but not treated other than structure,
routine of hospital. May have saved my life.
JAMES: My immune system and digestive
system collapsed between the ages of 11 and 12
and I almost starved to death.
Our Autoimmune Collapses
JAMES: When I was 11, I had an extremely stressful
experience in the fifth grade, where I was never able to feel
calm in school. I suffered periodic bouts of stomach flu and
abdominal pain during the year. Finally, I woke up with
extreme abdominal pain less than two weeks after I
completed the fifth grade. I started feeling abdominal pain
after each meal and gradually lost my ability to eat normally.
RUTH: After years of similar gut issues I was diagnosed with
Irritable Bowel Syndrome (IBS) in my 20s. The medical
books dismissed my diagnosis as just being a mental
disorder. It was not acknowledged as neurological/ physical
until I saw the museum exhibit "Body Worlds", 2007.
Our Autoimmune Collapses
JAMES: As my autoimmune collapse began, doctors were
unable to accurately find a cause of this ailment. Some of
their interventions even made my problems worse. I
gradually became unable to tolerate solid food and lived on
liquid meal replacements for approximately 6 months. A
blood test showed an autoimmune collapse, high levels of
mercury, and an impaired digestive system, yet a
pediatrician interpreted the test as showing I had “nothing
wrong.” Throughout my immune collapse, I lost 45 pounds.
RUTH: Just because a doctor says nothing is wrong doesn’t
mean the same as everything is all right. And things are
going to get worse with the Affordable Care Act.
Our Autoimmune Collapses
JAMES: Although my abdominal pain eventually started fading, I
started losing my desire to recover and started “enjoying” being
sick. I was often force fed by parents in an attempt to stay alive,
and started hearing schizophrenic-like voices in my brain, due to
my malnourishment and starvation. I also endured major appetite
loss even after my abdominal pain faded after meals, and started
experiencing respiratory attacks after certain forms of exercise.
To start the recovery process, I joined a Buddhist temple and used
meditation temporarily to help clear my mind, however, this
eventually did not work for me. I also underwent drama therapy to
help deal with some of my past autism-related traumas. Finally, an
endoscopy showed signs of acid reflux disease. However, I was
still almost on the verge of death until a turning point emerged 6
months after the collapse.
Our Autoimmune Collapses
JAMES: This turning point began with sessions of acupuncture
which gradually impaired digestive abilities. I also discovered
some of my abdominal pain disappeared when I drank hot tea
during meals, along with ice cream. I also gradually started eating
soups to improve digestion.
These remedies were not sufficient, however, as I still endured a
total appetite loss and had lost the will to eat. The final remedy
that ended my autoimmune collapse was taking zinc supplements.
With zinc supplements, my appetite loss ended, I started eating
normally, and fully recovered from my autoimmune and digestion
collapse 2 weeks after taking the supplements. By the time I had
recovered, I had been ill for approximately 10 months.
Our Autoimmune Collapses
RUTH: In my twenties, I was too young to feel this old! I still
believed In a greater good, though, and was optimistic!
Once I began working as an R.N., I began to get some sound
medical advice, usually from conversations with colleagues at
work hearing my story and pointing me to the right medical
professionals.
I suffered major gut issues. I was diagnosed as having irritable
bowl syndrome. I went home to read a medical dictionary, only to
find that my issues were dismissed as a "mental" condition! My
issues kept me from gaining weight. I had a “jello” diet, and
society thought I “looked” good and healthy. As stated previously,
not acknowledged as physical until 2007.
Our Autoimmune Collapses
RUTH: After the birth of my fourth child, I finally gave up all
psych for spiritual treatments—if not spiritual then physical. Just
because it can't be seen or touched doesn't mean it's not
physical, Internet was helping with grasping this concept.
My son's medical issues being neglected and dismissed too. By
now, it was going too far!
In the year 2000, another visit to doctor for another infection,
Pink Eye. I also discovered weight shock. Socially, these
conditions are “not that bad," but medically they are! A low carb
diet was suggested. When I started, my weight came off but
depleted health began to once again affect my functional ability
at work. "My processor is jammed" and " I am not safe" was all I
could say.
Our Autoimmune Collapses
RUTH: Fortunately my manager, and most professionals working
with me, also could see and "assess" my struggle, even if none
of us knew exactly "why." And that began my medical journey.
By now, my immune system and neurological systems were both
fried. I had an "intriguing case“ of health issues, but my
insurance ran out.
We've had many more issues since
then, and still do, but that’s all the
time we have for now.
So why did we decide to become
vocal about biomedical issues?
JAMES: For many years, I was very quiet about my
biomedical issues. I wrote several novels and spoke
more about social and educational issues, as well as
advocating for Auditory Integration Training. I also
established myself as an author and presenter and have
spoken at conferences all around the United States.
RUTH: I’ve been doing this long before I met James but
was encouraged not to talk about it. I was told it was
“too negative” and too controversial. But advocating for
my children, refusing to let them go down the “mental”
road, instead of the physical road, and refusing to
neglect how their health issues affected their abilities,
compelled me to speak about these issues.
JAMES: During my travels around the United States, I started hearing
stories from people with autism and their families about their biomedical
issues. I have also met many doctors such as Dr. Jeff Bradstreet and Dr.
John Hicks who encouraged me to speak about these issues. Finally, I
felt upset that there were not a lot of people with autism talking about
their biomedical issues.
Seeing what I mentioned above, I decided it was time for me to speak
out about them.
RUTH: Dr. Steve Edelson of the Autism Research Institute, invited me to
go to DAN! Conferences, where I was introduced to many doctors and
nutritionists, such as Dr. Martha Herbert, whom I discussed neurological
connections related to autism. In addition, Dr. Andy Wakefield was the
first person to hear my medical story. He said my medical history was
“fascinating” and encouraged me to share the “Hope” that he saw I could
share.
With that, we would like to
share the following advice for
anyone who is enduring
biomedical issues, or wants to
help a person who is enduring
biomedical issues…
Advice
JAMES: Be aware that many of us are not always
able to understand the science of our ailments but
we still suffer and feel the pain.
People with autism aren’t always focusing on
whether or not vaccinations caused their
ailments, and the vaccine debate should not
distract people or get in the way of helping
autistic kids who are chronically ill.
Advice
RUTH: We should learn to assess a
person with autism and their issues,
rather than judge them.
In addition, the cause of your child’s
autism may not be relevant to all of your
child’s issues.
Advice
JAMES: Some children with autism may not be
fully aware of what it means to not be sick since
they have been ill much of their lives and may
resist attempts to recovery because they may see
it as an unknown change to them.
Safe zones should be provided for people with
autism to openly share their issues with people
they feel comfortable talking to. They should be
allowed to talk to people they are comfortable
sharing with.
Advice
RUTH: Redefine what is “normal,” what
constitutes lifestyle modifications, and
what “healthy” looks and feels like. In
addition, learning about one’s self is an
individualized educational journey.
We are teaching & always learning (NAC)!
Advice
JAMES: Remember that social rules in society make many
topics about health inappropriate subjects to talk about,
and have hurt people with autism in their attempts to
communicate their problems with others, and we need to
find ways to help them speak.
In high school, I had many friends who endured health
issues and often felt frustrated that they could not speak
openly in many social situations when they needed to
about their problems. My friends and I created safe social
groups where we had the right to be open. We should
create these places for kids with biomedical issues.
Advice
RUTH: Like what is taught with the CAT Kit (I
modified ours to help with physical not just
emotional feelings). It is important to teach our
children how to think not "what" and allow them
to learn to understand how they feel inside. Be
careful not to let them learn that “physical” is
“mental.” This is a difficult challenge due to
verbal abilities, sensory issues, and. "Black or
white" thinking, but it can be taught/learned.
Examples: How do you feel today? How are you?
To conclude…
Conclusion
JAMES: Biomedical issues are real. They are not
just the ramblings of quacks or doctors who have
been disbarred from practicing medicine.
In addition, the disqualification of a few doctors
who have worked with children with autism should
not invalidate all biomedical research or all
doctors that research biomedical issues with
autism.
Conclusion
RUTH: When people with autism physically
don't feel well, our language, be it our verbal
language or body language, can change
drastically.
As a mother with autism, I had to first “learn”
how before I could “teach” how.
Conclusion
JAMES: My mother always told me growing
up, “The ability to communicate your needs
honestly is the best way for people to
understand what you are feeling and going
through!”
Conclusion
We hope that more people with autism in the
future can be vocal about their biomedical
experiences, and we hope we have given a
voice to others in this presentation with autism
who have not been able to communicate these
issues.
Thank you for listening. We will now answer
your questions.